My grandmother was diagnosed with Alzheimer’s dementia in 1983. She was a kind person, with a gentle heart, compassionate nature and warm smile. Growing up, visits to her home were the highlight of my summer.

When she was diagnosed with AD, not much was known about the disease. They often called it senile dementia back then. As was and is often the case, the caregiving fell to my aunt and the brothers (my dad included) did everything else. They took care of the property, managed finances, filed taxes and pitched in funds to pay for someone to give my aunt a break occasionally. It was truly collaborative and still exhausting and at times overwhelming to my family. I never heard my aunt complain but I could see when grandma moved in with her, how the supervision and care took over her life.

I wanted to help, I wanted to know more, so I changed my major in college to Gerontology and wrote my senior thesis on Alzheimer’s. I scoured the health library at Stanford University and any other peer reviewed science or medical journals I could find. Not much to find.

Aside from little being known about the disease, there were very few services. No adult day programs, in-home care agencies, companion services, transportation, meal services, home monitoring systems, dementia activity ideas and other tools to make things better and easier. No support groups, education, formal peer support or therapy services or coaching specific to aging and dementia. I decided I wanted to do something about that. And I have for almost 30 years.